Help us to understand when and how ALS begins
Recruiting unaffected family members of genetic/familial ALS
Study Name
Pre-fALS (Pre-symptomatic Familial ALS)
PI
Michael Benatar, MD, PhD and Joanne Wuu, ScM
Study Type
Observational, Longitudinal, Prospective, Biomarker
Eligible Population
- Unaffected individuals with a family history of ALS and who may be at genetic risk for developing ALS
- Individuals living in the United States or Canada
Study Purpose/Goals
(a) Characterize the pre-symptomatic phase of ALS
(b) Develop biomarkers that may be used to detect pre-symptomatic disease or even permit the prediction of if/when a gene mutation carrier will develop ALS (or FTD)
(c) Prepare for a disease prevention trial.
Procedures/Participation
- Genetic testing (with choice whether or not to learn the results)
- Genetic counseling
- 3-day study visits in Miami every 12-24 months
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- Family and medical history review
- Collect blood, urine, and CSF fluid (CSF optional)
- Brain MRI
- Neurological exam
- Full neuropsychological exam
- Breathing testing
- Fine motor skills testing
- Epidemiological review
- Surveys
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- 15-minute phone call check-ups every 3-4 months alternating with at-home remote visits consisting of questionnaires as well as blood and urine collection
Links
Contact
Join our family - together, we can change the course of this disease.
Join our family
Together, we can change the course of this disease.
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